Lymphoedema...M.L.D. and/or compression garment?

i did have it weekly 6 months post operation then stopped but have had to start again 3yrs post op and it still not any better but the mld very good wish could have it everyday

Hi Ladies,
I developed lymphoedema in my right hand and arm in May 2009 while having chemotherapy while I was living in Australia. I thought the situation was bad over there as there are very few specialist physiotherapists so only got MLD when there was someone available. But when I got back here I realised the support for lymphoedema is just as bad or infact worse. The compression garments given in Australia were made to measure (the Occupational Therapist was trained in the measuring and saw you regularly to check change in size so that new garment could be ordered). Although these were pretty ugly and only in 2 colours (black and beige)at least they were a perfect fit. These were made in Germany and took 10 days to arrive (remember I was in Australia).
Since coming back to the UK I have only been offered 2 garments (not made to measure) and 1 glove. But no MLD at all. My lymphoedema has improved a bit through light massage that I do myself (I was shown this by the physiotherapist in Australia) and swimming every day.
Would it not be a good idea if there was a lymphoedema surgery type place where people with lymphoedema could get trained to give the massages for the milder cases so that they could help each other and do the massages for each other so we don’t have to rely on the NHS? What do you think? If these surgery were connected to community places with a pool, water exercises could be done too. Wouldn’t the best thing for all of us be to be able to help each other? It would also be a good way to meet with ladies with the same problem, share our experiences and have a laugh together.

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Hi all, well I have been called in for my fitting of new compression garment,ie surgical vest,all I can say is it’s a jolly good job that I have a sense of humour as ended up with the lymphoedema nurse laughing our heads off or maybe I was just verging on the hysterical !

The garment made by “jobst” has on the box I quote…"comfort,health and style ! " hahahahahahahahaha omg,I wonder for whom??? Now I only had a wle and am a sizeable 38e and having to squash myself into this thing was a sight to behold, not much different from the first monstrosity I was offered,front fastening hooks and eyes then a zip to flatten you ,and thick velcroed shoulder straps that just dig in, and when I put my t-shirt back on,there it was on show for everyone to see as it sits so high up the neck.Soooo alright if I was 96 yrs old and not 46 and wanting to wear a poloneck jumper every day of my life ! Jeez, who on earth designs these things ! At least some though should be given to the practical everyday wearing of such an item or is that just too much like common sense…

What has been decided in my area is that my lovely lymphoedema,which is mild and has been held in check for the past year by a monthly mld session and self management,hmm so that was working…well they want to change that to stuffing us in compression garments and giving us a 6monthly mld treatment of 3 treatments in the same week …if it aint broke why fix it,but the powers that be say that this is what the research is pointing towards as the way forward. I’m not going to be very pleased if mine gets worse !
I am lucky in that I have the most fantastic nurse that hopefully will be getting to manage her own patients a bit more independently and assures me that will do her best to accommodate me instead of just towing the party line and being a jobsworth.We have talked that if possible we could be looking at setting up a support group as there really doesn’t seem to be much out there for us lymphoedema suffers. So great idea Pudding,we seem to be singing from the same sheet. Has anyone on here actually heard of there being a support group for this in their area?

As for my garment of torture, has been suggested that I try wearing it in bed, very sexy…as I can’t see me getting much use of it during daylight hours,will let you know how it goes…

Hugs and squashed bits

Sandra x

just had to comment on this thread as ive had lymphodemia since 2007 and have only now been offered mld! and i also now have to wear one of those very fashionable compression garments for my chest!!! to say its hidious is an understatement ,i also wear a gauntlet and have painted it using fabric paints ! this works ok but has to be redone after a few washes .i wish we didnt have to put up with the bad service when we get lymphodemia ,but im afraid it seems to be the norm in this field as not many nurses are trained in mld.as for the gps they dont have a clue as to how painful it can be at times .can count on both hands the times theyve tried to take bloods from my bad arm ! wish i was brave enough to post a piccy of my lovely garment but it may put you all off ,and i cant seeit makes mush differance as when taken off my chest fills up again ! oh well onwards and upwards !!!

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